Thursday, 2 January 2014

Insights gained through Illness

Given that my last post was fairly downbeat and a lot of my recent posts have been borderline whiney due to relapse-related issues, I thought now was a good time to reflect on what I'm actually thankful for as a result of this illness. I would never have chosen to be ill, I hate this illness wholeheartedly, and am desperate to one day be well again, but I have learnt a few things as a result of the experience.

I'm thankful for the insight it has given me into suffering and long-term ill health. There is a significant proportion of society that I could never have truly empathised with had I not had the experience of chronic illness that I've had. You just don't realise how hard it is to live with constant symptoms, every day, until it becomes your reality.

It's a massive cliché but it's made me grateful for the small things in life. The little things that make me smile each day. When you leave the house for the first time after a relapse you really do properly notice your surrounding- how green the grass is, the clouds in the sky, the wind on your face- just being outside in nature feels like an experience. I never felt that way before I was ill. I admit that a majority of the time I still don't now, but those moments when you really are just in awe of your (perfectly ordinary) surroundings are amazing. On a daily basis it's normally little things like seeing my dog look really comfy and content or watching something funny on TV that make me smile. Those little things really do matter.

It's made me appreciate what's truly important: happiness, quality of life, friends, family and health.
It really is true that you don't know what you've got until you've lost it- I definitely didn't appreciate my health. I actually thought I was a bit sickly because of having a few allergies and my (then mild) asthma meaning I was prone to chest infections... I don't think I once thought about how lucky I was to have the freedom that being well gives you.
It has also made me appreciate the people in my life, and helped me realise who my real friends are. I'm lucky to have friends and family who have helped me through some of the challenges I have faced as a result of this illness. My friends and family are amazing people and I'm very sorry for putting them through so much. Starting to blog and letting people into my little illness bubble that had previously been so private was a difficult decision, but I'm glad to now have more people around me who have a greater understanding of my situation. Illness can be a lonely experience, so little messages of support from real-life friends and fellow sufferers have really helped me through some very difficult times; I'm enormously grateful for that support.

It's made me realise how accepting a lot of people are, and that I don't need to hide my illness away (which is good, because I now can't, lol). My illness makes me different, but I'm lucky to have people around me who treat me as a respectable, intelligent human being but also don't ignore this difference when it needs to be worked around or try and deny it's existence, instead they accept it as part of my current reality and try to make things accessible to me, without making it a focus or a big deal. I couldn't ask for more.

I'm grateful that I have more awareness about the inequalities and injustices in society. I was- like most healthy people- ignorant to the unfairness and difficulties faced by disabled and chronically ill people. Nobody with disability or chronic illness has chosen to be in the situation they are in, and they don't deserve to be victimised or singled out as a result. They deserve to have access to all that healthy people have access to, and they deserve to be treated with dignity and respect. Reasonable efforts should be made to make things inclusive, not because disabled people should get any sort of 'special treatment' but because they deserve to be able to do all that well people do and often take for granted. We should be analysing our benefits system and checking whether the right level of support is going to the right people. We should be looking at the assessment system and evaluating whether it really assesses the ability to work. We should be looking at why so many decisions regarding some conditions are then overturned at appeal after a costly process. There should be support to help disabled people into appropriate work if they are well enough, and plenty of support available for those that are not. And we should all care about this. Any one of us could become unable to work due to illness, accident or injury tomorrow and need to claim benefits. And as a society we should want to work towards equality, want to support those most in need to be able to participate and be included. I'm glad I'm no longer completely ignorant about these issues.

Serious illness makes you aware of your own vulnerability and mortality, and that of those around you, which has made me treasure the time I spend with family and friends more. None of us know what is around the corner. I'm grateful to have realised how precious life is early on, so that it doesn't just pass me by.

I'm grateful that it's made me very aware of what I want in life but also that ambition isn't the end of the world. More than anything I want to be happy. Completing my university course and getting the career I want would be phenomenal, I want it so much, but I'm starting to realise that I would be stupid to jeopardise my health to get there. Maybe I'll get there alongside my peers, maybe it'll take me longer, maybe I'll never get there; as long as I manage to achieve a reasonable quality of life and am happy, that's all that truly matters.

It's taught me that life is very unpredictable and I'm grateful to have that understanding. I live more in the moment and appreciate the experiences and opportunities that come my way. None of us can know what our future holds (even if we sometimes desperately wish we could!!), and we will never have full control over this, so it's important to be adaptable and accepting of change.

It's taught me to be less quick to judge. When people jump to the wrong conclusions about you, it makes you wonder whether you have done the same to others. When I was invisibly ill I was often presumed healthy, now that I'm normally visibly disabled (because I'm on a mobility scooter) I'm sometimes presumed thick/mentally incapable. I'm more cautious not to make assumptions about things now as a result. It's so easy to take things at face value or judge because of stereotypes and be completely mislead. The old saying is true: don't judge a book by it's cover.

I'm surprised by the number of things my illness has taught me. I hate this illness, but in the future I think I will look back on this period of my life and see that it has shaped me into a better person, maybe a little bitter at times, but mostly better. I've lost a lot because of this illness, and I fear that further losses are just around the corner, but I have gained valuable insights from this experience too.

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